The invisible children: The burden of heart disease in children in India

Congenital heart defects (CHD) are a group of defects involving the structure of the heart and heart vessels. They are the world’s most common major birth defect, affecting 1 in 120 children globally. About half of all children born with CHD will need some intervention during their lifetime and a quarter will need a corrective intervention in the first year of life in order to survive.¹

CHD is under-diagnosed and thus an under-resourced condition in most low- and middle-income countries. India is no exception. In fact, CHD is an even larger problem in India because of the size of its population. With a population of 1.3 billion divided across 29 states and 7 union territories, and an estimated 26 million births per year, approximately 250,000 children are born with CHD every year and a quarter to a third of them would require surgery in the first year of life². All of these children get added to the uncounted, untreated backlog pool of children and adults from previous years. By some estimates, there are 1.65 million children living with CHD in India today.

In addition to CHD, India also has a significant burden of rheumatic heart disease (RHD), especially in the less developed regions and states. RHD is a disease affecting the heart valves and resulting from untreated rheumatic fever after streptococcal infection. The result is that young children need valvular surgery and need to take medications for the rest of their lives. RHD is preventable, and it disproportionately affects children living in regions with high poverty. The overall prevalence of RHD in India is estimated to be about 1.5-2/1,000 in all age groups, suggesting that there are about 2.0 to 2.5 million patients with RHD in India.³

Yet the scant national statistics about care provision tell a different story. On an annual basis, less than 10% of children born with CHD undergo any form of intervention.⁴ Delayed diagnosis, an insufficient number of specialized centers providing appropriate treatment, as well as insufficient numbers of pediatric cardiac professionals and limited geographic coverage all contribute to the gap in care. There are a limited number of children’s healthcare foundations which also work in this area in India.

In addition, there is little awareness about CHD and heart disease in children in general in the primary health care community and elsewhere, demonstrating a lack of integration of the disease into the overall health care system.

Finally, cost is a major obstacle. While the introduction of the Rashtriya Bal Swasthya Karyakram scheme was a great step forward and made care affordable to many families, there are still too few centers, far from enough to serve the needs of the country. The new Ayushman Bharat National Health Protection Mission will hopefully make even more improvements and will make care affordable and accessible for more families.

Some older estimates assume that 49,000 births are registered in India every day. Using the generally accepted estimate of prevalence of 8/1,000, this means that 390 children are born with a heart defect in India every day.⁵ That is 390 children, 300 of whom will never be diagnosed or treated and a 100 will most likely die by the time they turn 1-year old.

India’s medical and health policy communities collectively need to do more about this pressing problem. In 2016 Children’s HeartLink published The Invisible Child Call to Action, the final paper in a 4-part series calling attention to the burden of heart disease in children and the tremendous inequity in access to pediatric cardiac care. The paper sets forth recommendations in the areas of health systems, workforce development, surveillance and financing, to actors with the particular ability to impact change and improve the lives of children with heart disease around the world. All recommendations are fully applicable to India and the improvement of the health system there. A broader awareness is needed about pediatric cardiac care among the community, the medical establishment and the health policy decision makers. The most critical health workforce changes are needed in subspecialty medical education, and nursing education and professional development and empowerment. But there are many others, such as physical access to treatment, critical medications availability and access, and overall population health approach to heart care in children.

Children’s HeartLink has been working in India addressing these issues for almost 20 years. The organization’s partnerships include two Children’s HeartLink Centers of Excellence and three other partners on a path to becoming Centers of Excellence, all providing treatment to children from throughout the country. The organization’s core competency is working with pediatric cardiac centers to build capacity and improve clinical skills, thus promoting quality pediatric cardiac care.

The Genesis Foundation – a children’s healthcare foundation, too, has been actively helping and sponsoring children’s cardiac treatment throughout India, helping children in need of urgent cardiac care and working to ensure they receive timely and appropriate treatment. The Genesis Foundation’s focus on providing access to high-quality care to the neediest patients is especially commendable.

As the United Nations organized the Third High Level Meeting on Non-Communicable Diseases (NCDs) we hoped CHD and RHD to be part of this agenda. Unfortunately, that did not happen. As diseases that disproportionately affect children, they have not traditionally been included in the NCD discourse. We hope India will take this in consideration as the country is contemplating its participation and commitment to NCDs reduction.

If India is serious about achieving the UN Sustainable Development Goals, its leaders and policymakers must take action to increase investments in sustainable and equitable access to pediatric cardiac care. Children with cardiovascular disease need our help.